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ITP relapse after 4 years

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1 year 2 months ago #73029 by th8899
ITP relapse after 4 years was created by th8899
After 4 years of remission (100k+ without any med), my now 16-year-old son woke up this morning with petechiae all over his body. We rushed to ER, and the platelet was down to 5k. It is so frustrating. We all thought this was behind us now. ER doctor consulted his hematologist and put him on 60mg prednisone until our hematologist could see us sometime this week. Prednisone actually never worked last time, hopefully, it could do its wonder this time. I'd like to hear about any experience of relapse. Is it will be more difficult or easier to deal with?  Will the same treatment work again? Last time, Promacta put him into remission. Thanks

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  • dmurashi09
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  • Diagnosed with ITP in 2011 at age 45. Remission 11 years until 2022.
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1 year 2 months ago #73030 by dmurashi09
Replied by dmurashi09 on topic ITP relapse after 4 years
I'm sorry your son relapsed.  Has he been sick recently? Received any vaccinations?  These may cause platelet counts to drop.
How long did your son take Promacta and at what dosage?  I assume he stopped taking it at some point.  ITP affects everyone differently, which makes it difficult to predict how someone will respond to a given treatment.  I'd be interested to hear if the prednisone works this time and what his hematologist recommends for treatment.  

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1 year 2 months ago #73031 by th8899
Replied by th8899 on topic ITP relapse after 4 years
Yes, he had a cold less than two weeks ago. However he was sick several times during last 4 years and even got COVID last September. None of those drop his count. I think it must be some specific virus set him off. Back 2018, he was on Promacta for about 11 months, from 50mg to 75mg to 25mg then 25mg every other day. Then we just stopped it and his count maintained above 100k+ for almost 4 years. He also formed habit to check for petechaie often, just few days ago he was all good. We will go back to children’s hospital tomorrow to see if prednisone works or not. Fingercross this is just a temporary drop due to virus.

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  • dmurashi09
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  • Diagnosed with ITP in 2011 at age 45. Remission 11 years until 2022.
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1 year 2 months ago #73034 by dmurashi09
Replied by dmurashi09 on topic ITP relapse after 4 years
I relapsed after 11 years of normal counts.  Long story short, woke up to see blood spots in my mouth. Went to the ER and found out my platelets were at 2K.  IVIG and dexamethasone infusions for a week brought my counts up to 230K but they dropped back down to 20K only 10 days later.  Went back on steroids for about 7 weeks but told my doc that I wasn't going to take them any longer than that so I tapered off. I then started Promacta at 25mg daily and my counts have steadily risen...quite dramatically. Last count was 390K.  I should note that I am taking 1600mg of papaya leaf extract daily (split into two doses of 800mg), also, and avoiding processed foods and sugar.  Now I'm worried my counts will become too high, which I never thought would happen. I'll talk to my doctor about this and see if it makes sense to reduce the Promacta dose to every other day.   I'd be happy with a stable, medication-free count of 50K. But nothing is for certain with ITP.  I'm certain most of us are checking ourselves for petechiae and purpura daily.  Hoping your son's relapse is only temporary.
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1 year 2 months ago #73035 by th8899
Replied by th8899 on topic ITP relapse after 4 years
We visited Children's Hospital today for a follow-up. Unfortunately, same as last time, 60mg prednisone did nothing at all. His count is still at 4k. But he has mild symptoms this time, just some petechiae on his legs and shoulder. So we agreed to go back on Promacta again. Also, our hemo said since he relapsed, he will dig a little deeper to rule out any other cause of ITPs. He drew 9 vials of blood and ran a full autoimmune panel to check for everything. So far, C3, C4, DAT, and LDH results are coming back which are all normal. I am sure there are dozens more results that will come back in the next couple of days. Hopefully, everything is good, and he is still just ITP.

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  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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1 year 2 months ago #73036 by mrsb04
Replied by mrsb04 on topic ITP relapse after 4 years
I'm certain most of us are checking ourselves for petechiae and purpura daily.

I most certainly am not. ITP is not ruling my life to that extent.  I have better things to do than look for symptoms. 
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  • dmurashi09
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  • Diagnosed with ITP in 2011 at age 45. Remission 11 years until 2022.
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1 year 2 months ago #73037 by dmurashi09
Replied by dmurashi09 on topic ITP relapse after 4 years
Good for you. It doesn't rule my life either.  I just take a few seconds each day to look.  No harm in that is there?
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1 year 2 months ago #73038 by th8899
Replied by th8899 on topic ITP relapse after 4 years
Honestly, this time we are so much calmer. I remember 5 years ago, when this happened the first time, our entire family was in panic and almost came to a standstill. This time he has very few symptoms, only some petechiae so far. Our hemo also agreed to wait for a little without any treatment and closely watch for symptoms. I thought 5 years ago, we really over-treated him. All these IVIG (12 rounds in 4 months) and prednisone (up to 100mg) caused a huge up and down of his count in a short period of time. I think it actually messes up his body and makes the symptoms even worse.

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1 year 2 months ago #73039 by MelA
Replied by MelA on topic ITP relapse after 4 years
Well darn it th - would have been nice if the prednisone had increased your son's count to a decent level - how long was he on it?
Good you are getting some blood test results that are normal - hope that continues.  It does seem that so many new ones here that were just diagnosed have been bombarded with many treatments all at once, the body can't like that (my opinion).  Maybe it is good to hold off on treatment for a bit to see if he may rebound on his own but watch closely for symptoms.  Boy it would be a blessing if his count would rebound to a decent level - fingers crossed for him!!

I've had ITP since 1989 and I certainly do not daily check for anything - I'm happy to be getting out of bed and being on the right side of the grass :)     And actually when my count did hit the gutter after a tetanus booster I didn't have 1 symptom, it was just a feeling that my count was low that sent me for a CBC.

Hang in the th - sounds like you are doing right by your son and that your son is handling this well.   

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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1 year 2 months ago #73040 by th8899
Replied by th8899 on topic ITP relapse after 4 years
More test results are coming back today. I am really frustrated now. His ANA is positive, but dsDNA, Anti-SM, and Anti-RNP are all negative. Don't know what to think now. Waiting for our appointment with Hemo next Tuesday.

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  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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1 year 2 months ago #73041 by mrsb04
Replied by mrsb04 on topic ITP relapse after 4 years
A virus such as the common cold can produce a temporary positive ANA.  

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1 year 2 months ago #73042 by th8899
Replied by th8899 on topic ITP relapse after 4 years
I wish that is the case. But his titre seems a bit high at 1:320. We will see what his hemo will suggests.

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